need advice on traveling w/a bleeding disorder

crazy4tig

Mouseketeer
Joined
Nov 16, 2006
Messages
85
Hi everyone, looking for advice on traveling with a child, just this past weekend, diagnosed with ITP (very low platelet count). He is having weekly blood tests up until we leave on Jan.26th as long as his count continues to rise. If we have any issues while at Disney...where do we go? Where is the closest ER? I'm a nervous wreck and would love any advice. :sad1:
Thanks Melissa
 
First thing I would suggest is aking his doctors if they have any recommendations of specific doctors, clinics or hospitals in the area. Doctors often know or know of those things in other areas because they trained with people who went there, meeting other doctors at conferences, etc.

Second suggestion would be to get a short summary of care from the doctors to take along with you. It should include contact information for his current doctor/clinic/hospital. That way, if anything happens, you will have a quick reference for whoever sees the child in Orlando.

The nearest hospital emergency room is in Celebration and that is where they send people who are in life threatening emergencies because it is closest.

The front desk or First Aid in any park can help you with where to go and how to get there - from Urgent Care/clinics/hospitals and driving directions/calling a cab/ambulance.

If he has an issue in a park, go to First Aid. They are staffed with RNs and will call EMTs if you need more care than they can give.
If you are in a park, but not near First Aid and can't get there, ask any CM to call for help for you.

Keep reminding yourself that emergencies happen every day at WDW parks and resorts. Most people are not even aware of them because WDW does a good job of handling them quickly and quietly.

Last thing I can think of - be prepared in case bleeding starts somewhere else. On our last trip, as we were waiting at the airport gate to come home, we saw a family with a young man who was having a very bad nose bleed. They had nothing except a few tissues with. People were bringing them paper towels from the bathroom and a housekeeping person had cleaning cloths, but that was it until EMTs arrived. We had a package of hand wipes that we gave them because the young man was freaking out about all the dried blood on his hands.
I would suggest having a bag with some supplies, including lots of tissues, some wipes, gloves and a small trash bag.
 
Thank you so much Sue. Those are great suggestions! His hematologist said as long as his levels continue to rise he can go but unless they reach 100,000 she doesn't want him to go on any ride that would shake him around. He's 8, so I've prepared him for not going on any of the "big" rides. Honestly, i'm not sure if i'll let him even if they get up to 100,000. I'm trying not to be neurotic but it's really hard!! I think it will help to be prepared, so thanks again for the helpful info:worship:
 
You might want to check out the second page of the disABILITIES FAQs thread. You can find that thred near the top of this board or follow the link in my signature.
One of the posts on page 2 lists the attractions with warnings and gives a bit of information about them.
The attractions with warnings are also marked on the park maps with a red triangle and have signs at the entrance to the queue, at various points in the wait and before boarding.

Hope everything works out well and you have a great trip.
 

My dd9 has Platelet Storage Pool Dysfunction - she has enough platelets they just aren't sticky enough for a good clot. She has atleast one nosebleed every day and I can't even count the times we've been unprepared. I know Celebration Hospital is pretty close and WDW will arrange transport to local urgent care centers.
 
It is very good advice to carry a summary of his illness and treatment plan, as well as contact numbers for his main doctors. You also need to take a list of any medications he may need.

I don't know if your son will need special medicines for clotting or not. If so, you may want to bring those medications. My daughter has Von Willdebrands with Low Factor 8, so she needs two types of medicines when she is bleeding. Not all hospitals stock those medicines.

Also, if you have to go to the emergency room, contact your hematologist immediately. Not all ER doctors know a lot about bleeding disorders and you will want to keep your specialist in the loop.

Bleeding problems sound so super scary and can be really stressful to you as a parent (especially at first). But as long as you are taking proper precautions - keeping information with you, having any medications you need, limiting activites if his platelets are low - it will be okay. Try not to worry too much and still have a good time.
 
Thanks for all of the good advice! 2 weeks til we leave and my DS and dd woke up today with a stomach bug! Better this weekend than 2 weeks from today!! Thanks again
 
Our daughter was diagnosed with ITP at one and a half, a month before our first trip with her. We were scared. I made sure we had all inofrmation from doctors and a number for hospital there. We also went for a platlet check the day before we left.

The good news is after our initial hospital stay and treatment, she hasn't had any other problems since. She contunues to bruise easily and we continually check her for excessive brusing or petechiae. We have taken her in for a check when we've noticed either and her count was then in the low normal range.

We've been to Disney twice since that trip and she's now almost 8, it's scary to travel, but just keep an eye on your DS and let him do what you are comfortable with....

Good luck, I know its hard!
 
Thanks DonaldnDaisy5 I really appreciate all of the advise. We leave a week from today and will have blood work done a couple days before we leave. Hoping for the best but preparing for the worst ....
 
Bleeding problems sound so super scary and can be really stressful to you as a parent (especially at first). But as long as you are taking proper precautions - keeping information with you, having any medications you need, limiting activites if his platelets are low - it will be okay. Try not to worry too much and still have a good time.

Echoing this!

My son was diagnosed with hemophilia at 2 years old. (No family history at all.) It's so scary as a parent. But our doctors have always reiterated that we have to let him be a kid just like any other. So, if his docs are okay with your son going, I definitely urge you to let him. Have a great time!
 
I have nonalcoholic cirrhosis and thus have low platelets as well - mine have ranged between 65k-98k over the past six months but are currently hovering around 90k. The others have given you great suggestions as far as preparedness and safety. My biggest recommendation is REST!!! Disney is taxing even on a healthy person and when those platelets are low exhaustion comes easy.
 


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